charlie’s story

Kleenex Warning: You may need some! Proceed with care.

Charles Fleetwood Anthoine

~ Charlie ~

May 21, 2003 ~ June 14, 2003

On May 11, 2003, I was the maid of honor at my sister’s wedding. It was hot, I was dressed in purple (and resembled a lilac Barney), had cankles the size of my thighs and was downright miserable. It was a very happy day but I was a painfully pregnant woman who was ready for it to be over. But I was only 34 weeks pregnant (or close to it).

On the way home from the wedding the next day, my contractions started. They were real and 15 minutes apart. FOR THE NEXT NINE DAYS. In the meantime, I had a regular appointment, no progress and had my Group B Strep test. I was told by my awesome OB that if I was positive, I would receive antibiotics during labor. Cool. I can handle that. The contractions continued. They were painful but not making any progress so I just had to wait.

On the evening of May 20th, they got bad. And five minutes apart. So off to the hospital we headed. I was checked and had dilated a teeny bit. They gave me my GBS results. I was negative (a week earlier… yes, that’s important because your status can change in a week’s time). I was given some Ambien and put in a room to sleep some as labor was imminent. My OB came in the next morning at 7 and went to check me. As soon as I put my legs up, my water broke. Game on, man. It was go time. Only “go time” meant it would be another 14 hours until he was born (though we didn’t know that at the time).

So let’s recap, just for kicks. Contractions every 15 minutes for 10 days. Contractions every 5 minutes for at least 12 hours before my water broke. There would be another 14 hours before Charlie was born. GAH! Don’t talk to me about how short and awesome your labor was, please. The next 14 hours involved turning him (he was sunny-side-up), lots of manipulation, an internal scalp electrode, meconium staining (for those unaware, that’s where he had pooped already inside me. Yum.) and a slight spike in fever before he was finally born. The last 3.5 hours were pushing. Hard. And often. And did I mention hard?

Finally at 9:19pm on May 21, 2003, our beautifully perfect Charlie was born. He was perfect in every way. Beautiful, pink, crying, no problems breathing even though he was born at 35 weeks and 2 days. He still wasn’t supposed to be born until June 15 (Father’s Day, by the way). He did develop jaundice and spent an extra two days in the hospital under the lights but that was minor and we were all set once we left the hospital on Memorial Day.

The next three weeks were blissful. He nursed well, slept great, was pleasant, was extremely alert and “wise” and we adored him.

On his three week birthday, June 10, our world would be rocked.

On June 10, he became fussy. He wouldn’t eat – nursing or by bottle. He had a high-pitched cry (that would end up being very telling of GBS). We took him to the pediatrician. Jason had been sick for a few days and the pediatrician thought maybe he was just picking up a bug from him. He had no fever, bloodwork looked fine. All seemed normal. He told us to watch him overnight and if he hadn’t eaten by morning to come right in. (Note: we saw him at 4:45 on the 10th)

He never ate again. He stopped crying around 9pm. He slept in the bed with us where we were able to keep our hands on him. Little did we know then…

Morning came. We were sitting at the pediatrician’s office when it opened at 9. One look and he told us to go straight to the Children’s Hospital. We still had no idea what was going on. We loaded up and headed over. Checked in and a nurse (who would become a friend) took him from us and headed to the Pediatric ICU. Maybe an hour (or 10) later, she would come out and tell us very frankly that we “have a very very sick little boy who wasn’t breathing when he arrived in the PICU.” ROCKED. TO. THE. CORE.

When we were able to see him, after they had stabilized him, there was full life support on our tiny, barely 7 pound baby. Tubes and wires and monitors… everywhere. Beeps, noises, people… everywhere. It was breathtaking.

Over the course of the next 24 hours, there would be tests, scans, blood draws. It was determined he had suffered MANY strokes from the not-yet-named infection. He was having seizures in spite of the high doses of medications he was on. He was septic and had meningitis. A spinal tap was done and his spinal fluid was so thick they couldn’t get but a few drops. Though it did determine the cause. Late-onset Group B Strep. The five words that would shake us to the core and take our baby from our arms.

An MRI the next day, Friday the 13th as it would be, would reveal what we were afraid of. We had already had the discussion with the doctor about removing care from him since he wasn’t breathing on his own, couldn’t regulate his body temperature and had no response to any stimulants. The MRI showed that there was no activity in his brain. The strokes and sepsis had destroyed nearly every bit of brain function he had.

Then we were faced with actually stating the decision we had made two days earlier. It was just a matter of when. We wanted it done on our own time.

Saturday morning started with my sister coming and bringing all the hats Charlie had received for gifts. For six hours we played “hat of the hour” and changed his hat and took pictures. He was held by us, his grandparents, aunts, uncles, anyone who came by and wanted to. It was a parade of visitors that day and for most it was the one and only time they had seen him. There were enough tears to fill a bathtub from friends who had driven several hours to pay their respects to our son before he took his final breaths. I can’t tell you how much that has meant to us over the last years.

At 5:00 on June 14th, 2003, just one day shy of his original due date, we gathered with about 2 dozen very special people in the tiny PICU room and our preacher had a baptism for our most precious son. Charlie was in a beautiful white t-shirt, a green and blue hat, holding his silky blanket and puppy dog. Our preacher spoke a few touching words that I wish I remember and baptized him. My sweet Aunt Diane started singing “Jesus Loves Me” and I remember sounds of moaning and crying coming out of mine and Jason’s mouths that in hindsight don’t seem human.

After everyone left the room, we were left with our first son. Our precious Charlie. Our pride and joy. Our son who would be taken from us decades too early.

Our intensive care doctor, Dr. Clark and nurses Julie and Tina there to help with the removal of support. Over the next 43 minutes there would be tears, kisses, touches, words of love and more tears. We were later told by Tina who was in the room, that as the machines flat-lined, a big ray of sunshine came in through the tiny crack in the curtain. It had been raining for 4 days non-stop so the ONLY explanation was that Charlie’s soul was leaving the room. At least that’s what I’m sticking with.

Charlie was bathed, wrapped in swaddling clothes and taken to the funeral home. Jason and I retreated to our home and opened the door to our new normal. And as our world stopped, everyone else’s went on, waking up to greet their Daddys with breakfast and homemade cards and fun on Father’s Day.

Jana, it is a blistering cold night with blizzard conditions and I just sat down to read Charlie’s story. Oh, the tears. I’m a blubbering mess in your honor. The pain you felt then and I’m sure, still feel now, is something I hope no one else ever has to feel. Why don’t they test us later if the results can change? That worries me for future mommies and daddies and babies.

I hope, at the very least, your story will help someone.

And you are right. Charlie entered this world perfect. And he left it perfect.

You are such a beautiful, strong and inspiring woman. Don’t ever stop writing or telling your story.

Oh thank you, Molly. This makes me so happy this morning. As painful as it is, I love sharing Charlie with others. If I share, he was really real. Some days it seems like a dream but when I can show him and talk about him, I know he WAS real. I held him. I nursed him. I bathed him. I loved him. I DO love him.

Testing at 35-37 weeks gives them a very accurate glimpse at whether you will be positive or negative at delivery. Since they have to culture it and it has to grow, that’s a good time to do it. There are “rapid tests” that can be done upon admission but they aren’t in every hospital yet. Hopefully it’ll catch on!

Thank you for reading and for encouraging me to continue sharing. Sometimes I wonder if it’s “too much” but you know…

Thank you for reminding me what a gift my son is. I was a false negative when tested at 35 weeks with my son. He was born appearing perfectly healthy at 38 weeks. They happened to notice some high respirations right before they sent us home and kept him for blood work…Group B it was. I have since lost a daughter to second trimester miscarriage and am daily reminded to treasure my son. I hope they have rapid tests in hospitals…would have never thought my status could change. Thank you for your post on Still Standing as well. Blessings!

Dear Jana….I am so, so sorry for your loss and will be heading to reapply my makeup in a minute. What a beautiful baby Charlie was. Here’s something I will take away from this…when my grandbabies start being born there will be rapid strep tests done. Period…end of story and no one will mess with this grandma:-) Thanks so much.

Oh, my dear God. I found you through A Day in Mollywood…
I am so, so heartbroken for you… and chilled to the core… I was GBS+ with both my boys… #1 was a c-sect for breech, so no worries, but #2 was a completely natural VBAC and I got to the hospital complete at 10cm (to my surprise) and there was no time to administer antibiotics… they kept us a couple of extra days to monitor the baby and he’s perfectly healthy, but I had no idea what could be the result of GBS. Now I know…. God bless you and your family, and thank you for sharing your story and your beautiful Charlie.

Thank you for visiting. I love Molly! She’s so awesome!!
Yes, GBS can be a beast. It’s VERY rare that the outcome is like ours, but it is possible. I’m so glad your GBS+ experiences were good, and that is very typical. I like to think that Charlie’s story has helped other babies in ways I’ll never know. He also gives me the strength to share his story. You can look at his picture and know he was meant for bigger things than Earth, but it still doesn’t take the pain away. But it does give me hope that his death had a greater purpose. Thanks for reading and hope you’ll stick around!

A friend of mine has a son who suffered from LOGBS. Until I read Charlie’s story I really had no idea of what a devastating illness this can be, and of the horrendous side effects. I am so sorry for your loss. I have lost a baby myself to a previously undetected illness and I can honestly say although Charlie is gone he will continue to manifest in your world.

Thank you for writing this, Charlie is a beautiful baby, and will remain a beautiful soul.

Thank you so much. Yes. It CAN be this devastating. And fast. It is extremely rare for a baby to die from it, but unfortunately my Charlie was that one in ninety bazillion or whatever the odds are. Charlie has given me so many avenues to help people, especially through the Ronald McDonald House, Children’s Hospital and now Band Back Together. Thank you for your sweet words and keep reading

Hi! It was so nice to meet you. Thank you for stopping by my site and reading about my sweet Charlie. He was a special boy and while his loss was and still is painful, it put me in the place I am today, which is a good place. But obviously it would be better with him here. Off to check out your site!

A facebook friend of mine posted a link to your blog & as I read Charlie’s story, I can’t help but praise God for my many blessings & pray that He continues to give you the strength to keep sharing your story. I will be 27 weeks pregnant tomorrow & my due date is June 14. I thank the Lord every day for the gift of motherhood that he has given me. I just want to thank you for sharing your story, because it has helped me to be even more thankful for my blessings. Charlie was a beautiful baby boy and now he’s a beautiful baby angel. I can’t imagine going through such pain; and I admire your strength and ability to use your tragedy to inspire others to appreciate their blessings. God Bless you and your family. Thank you again.

Thanks for visiting my site! That’s the main thing Charlie has done for most people… teach them to count their blessings. I count mine extra times. Sending lots of healthy baby thoughts and prayers your way! Don’t be a stranger to the site!

Jana-I am just reading this story for the first time. My heart just breaks for you guys. I know even though its been 8 years this is still so raw to you. I had only heard breifly what had happened to sweet Charlie but now I fully understand the hell his tiny precious body went through. You are very strong, much stronger than me. We count ourselves so fortunate as I got only a glimpse of what you guys had to endure when Cooper was in PICU on life support after he wouldn’t wake up from anesthesia. Let me tell you, that was hands down the worst 24 hours of my life. The helplessness, sadness, and most of all panic that I felt was unbelievable. And again, that cannot compare to what you guys have been through and I am so so sorry for you. There is nothing like your children that can rip your heart out. Thank you for sharing this. Now I will go blow my nose and pull myself together!

I’m so glad you read it. I’m sure Matt’s pretty unsure of what really happened, even though he was one of my first people I called! But he was all bachelor-ing it and not into the whole kid thing. 24 hours in a PICU or NICU will give you a MUCH bigger appreciation and understanding of what people with preemies or chronically ill children go through for months at a time. I can’t imagine having to endure a long stint. Thank you for reading and give little Coop a kiss for me. I want to meet him one day before he starts driving and all that!

Jana-Matt was not fully aware of what happened to Charlie until recently. He knew that it was something sudden but wasn’t sure what the exact diagnosis was. I’d love for him to read the story but I know he will not do it. He is very sensitive to things regarding children, especially now that he is a daddy. My mom lost her first child as the result of a placental abruption. He was deprived of oxygen and died shortly after birth. That was 31 years ago and to this day she still struggles with it. But anyway, Charlie is absolutely BEAUTIFUL and by sharing him with others you are continuing to bring life to him.

He’s always been fabulous with kids. Henry’s been smitten with him since day 1. I wouldn’t expect him to read the story. He knows what he needs to and has truly been amazing to my family, even before that. You got a good one! And I”m so sorry about your mom’s baby (your brother). It doesn’t ever go away fully. There’s a post I wrote called something like “A Rock In Your Shoe” that she would probably love! Thanks for your sweet comments! xoxo

I read your post on Still Standing, and followed the link to read Charlie’s story.

I am so desperately sorry for your loss.

I was especially affected, because one of my living children was born on the same day that your Charlie left this world. I looked at him sitting here, and the entirety of his life flashed before me, and your loss was magnified in my eyes.

Next week, when we sing to him on his 9 th birthday, I will be remembering yoursweet Charlie, and we will light an extra candle for him.Sarah recently posted..Send love

Oh, that makes me cry. Thank you so much for remembering him on your son’s birthday. We’ll sing happy birthday to your son on the 14th… tell him he’s got a little angel who will be celebrating with some cake in his honor Thank you for reading and commenting.

Jana, this is the first time I am reading this, as well. I knew your son had passed very young, but I never knew about him. His life. How much or how little time you had with him. I’m so sorry for your loss, but I don’t know that those words are enough. I thank you for sharing your story, promoting awareness and showing the incredible strength you have. Sending you much love, dear friend. Thinking of you all today.

There are no words for this. I just came over from Fadra’s to say Hello and read this. I’m sorry just doesn’t seem enough. After reading this I realized how very lucky I am to have my three children, happy and healthy here. I had strep b with all three of them, got the antibiotics in my IV throughout labor… I never realized what could have happened.

Thank you for reading. The chances are slim now that babies will contract GBS when protocols are followed. But it does happen. I’m so glad you had three wonderful labors and three fabulous children!! We all have our stories

I found Charlie’s story as I was searching for info on LOGBS. My daughter was born on July 31 on her due date and died August 13 only 14 days later from Late onset GBS with meningitis. I was tested at 36 weeks and was negative for GBS. She was born completely heathly and showed no signs of any problems until the day she died. Your story is inspiration to me and hopefully one day I can be like you and give a voice to this infection so more people know the signs. Take Care and you are so strong.

Oh, Amy. I’m so very sorry for your loss. It sounds like we have very similar stories, unfortunately. If you want to email me, please feel free. janasthinkingplace@me.com. Much love to you and your family.

I just read your story and my heart breaks for you. My son Chase was diagnosed at just under 2 months old with late onset group b and meningitis. We spent 17 long days in our local children’s hospital. I truly believe there needs to be better guidelines for group b testing, after reading your lab story mine was very similar. Long labors and lots of pushing. Drs should be testing the day you into labor if already tested negative for a “double check”. I’m thankful everyday for the impeccable care my son recieved, but it brings tears to my eyes that you and others are not as fortunate.

I completely agree… I’m so sorry your Chase was diagnosed, but SO very glad it was caught and he’s ok. The more our stories are out there, the more babies that will be saved. Thank you for your comment. Let me know if you have any questions or anything

I had no idea, Jana. In the Adoption, Loss, and Infertility community and in my years as a surrogate, I have read so many stories like yours. Maybe the cause of loss was different, but the substance of the feeling is the same. And no matter how many times I tap into that realm, it never hurts any less, and it never reduces to just words on a screen. Because each story is not merely that — it is a life, a history — one that simultaneously stops and continues indefinitely. And as heartbreaking as each are, each are also beautiful, meaningful, and even hopeful; they carry with them the will to continue on, to find new meaning on the other side of the After.

This is my first time visiting your blog and I’m blown away by your courage and strength, and also so impressed with the beautiful way that you cherish your baby boy Charlie. That picture of the four of you with Henry holding the frame is so beautiful.
So often when we experience loss we shut off and hide our true feelings. You’ve done a beautiful job of honouring Charlie’s memory, and almost creating a positive inspiration for others.
Thank you for sharing your very personal story.

Found you through Robin Plemmons, adding my tears to those already shed for your sweet boy Charlie. I almost lost my baby boy, he’s lived through 3 heart surgeries so I understand a little bit of what happens to you. I just wanted to thank you for sharing Charlie’s story- maybe it will help someone to save another baby. I will send the link to my friend who is pregnant, just in case. I don’t want to freak her out but you never know.

Oh, I’m so glad your little boy is ok… heart surgeries are tough stuff. I’m so glad you found me, and yes, share the story with the disclaimer that it’s very rare but something to be aware of! Many thanks for your sweet comment.

I read your post on Standing Still and it caught me offgaurd, I dont know why but i didnt expect the loss of your precious baby. I started to cry reading it. I then saw there were links to Charlie’s story so i clicked and i sobbed. i cant imagine going through this. We struggled with infertility for 6 years and have our miracle and i cannot imagine her being ripped from our arms. Your story makes me want to drop my work and run to the daycare and just hold her, which i will probably do in a few mins here. I shouldn’t be reading blogs at work and especially such touching stories as yours. You are an inspiration! As we come up on the 10 year anniversary i pray God gives you and your family peace and comfort.Stephanie recently posted..Guest post: Cherish R’s Journey

Hi Jana, I know I’m responding years late to this post about GBS but since you are educating lots of people about GBS, I hope you won’t mind if I contribute. Late onset GBS can occur independent of mother’s status. It is more likely to be community acquired, that is, passed by hand to hand contact
A premature baby less than 37 weeks is less able to fight of infection. Please remind parents that all newborns need to be shielded from the public as much as possible. And, of course n hand washing is a must.

I’m so sorry for your loss.
I tested GBS+ with my middle child. I was given two full doses of penicillin prior to delivery. She was perfectly healthy. Then at 11 days old, she spiked a fever. The fever was caused by a virus that our son brought home from daycare. It turned out to be a blessing that saved her life. They did the routine tests and found Late Onset Group B Strep in her urine. The culture counts were so low, it was not yet causing and symptoms and we were told it would have been horrible in a month or so. She was given 10 days of antibiotics and is a perfectly healthy 2 year old. Her brother potentially saved her life and the neonatologists were shocked. They had never seen a case caught before it grew.

I am crying for you. Devastated for you. Life is so beautiful, so heart breaking. I don’t understand why these things happen. Perhaps you have a better idea than I? I want to know more about your journey. What happens next? How did you survive?Lucy recently posted..Lessons from My Children: Be Giddy

I too had almost the same thing happen except I had to have an emergency c section at 32 weeks because I developed HELLP Syndrome. My baby girl, Hayden Grace was born beautiful, perfect and strong. I wasn’t tested for GBS. Then at 3 weeks, she too woke up crying. Not eating etc. by that evening we rushed to the hospital for just like you, a horrible situation. We pulled life support too because her brain was gone. Septic, etc. from late onset GBS. Her 1st birthday is comjng up on November 7. She got sick on Thanksgiving and died the next morning. The new normal is so hard because like you said… The world keeps going but mine stopped.

I did not know about you losing a child and Dennis and Peggy a grandchild. How absolutely heartbreaking. Your account of this is beautiful. Prayers for you, Charlie and all the other mothers and fathers who have endured this same situation.

Hi, First I Would Like To Express My Condolences To Your Family. I Too Just Lost A Twin Girl Due To Late On Set Meningitis On Fathers Day I Still Don’t Understand Some things & I’m So Hurt Torn & Confused I’m Dieing Inside I Cant Kick This & I Am Going To Keep U & Your Family In My Prayers As Well…

[…] so often we long to get those moments back — to go back before our children were born, before they died, before they walked or before they turned 16. We want to go back to when we were 25 or 40 and we […]

[…] lives and futures. On June 14, 2003, only 24 days after his birth and one day before his due date, he would gain his wings and we would become “Parents Of The Baby Who Died.”I won’t write about how this changed everything, because I figure you can imagine – even if […]

[…] On May 21, 2003, our son was born. He came a few weeks early but we welcomed him with open and eager arms, ready to get on with our lives and futures. On June 14, 2003, only 24 days after his birth and one day before his due date, he would gain his wings and we would become “Parents Of The Baby Who Died.” […]

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[…] Charlie died in June of 2003. It was a long summer and fall. And then it was winter. It got dark early. People continued to go on with their lives, decorate for Christmas, go see Santa, deck the halls and experience joy. We did not. That year we decided not to get a tree. But the closer it got, the more we realized we needed to try to force ourselves. […]

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[…] Charlie died in June of 2003. It was a long summer and fall. And then it was winter. It got dark early. People continued to go on with their lives, decorate for Christmas, go see Santa, deck the halls and experience joy. We did not. That year we decided not to get a tree. But the closer it got, the more we realized we needed to try to force ourselves. […]